ALASTAIR STEWART: My dementia has reduced my wife to role of carer

ALASTAIR STEWART: The worst thing about dementia? It’s reduced the love of my life to the role of carer. It’s demeaning for her and makes me feel guilty

I think it started with my shoelaces. About 18 months ago I began to have trouble doing them up, and my favourite double-Windsor tie knot also presented a challenge. It became clear that something was amiss. I began to turn up for work early — sometimes several hours early — and not looking at all shipshape.

At home in Hampshire, my wife Sally would pre-tie my ties and button up my shirts so I could just slip one over my head in the morning, after my shower. Nonetheless, my colleagues at GB News often had to gently point out that I was very early, or that I didn’t look my usual smart self.

And after a professional lifetime working with words, uncharacteristic slips crept in.

My children would point out spelling mistakes and errors in word order on my emails or social media posts. My agent told me they used to joke in the office about how pernickety I was, yet now my spelling and grammar were all over the place.

Sally said she first knew something was wrong when she asked me to reset our kitchen clock and I couldn’t do it; I couldn’t conceptualise what the hands signified, and I could no longer glance up and say it was ten past 11.

My immediate reaction was terror at those two words, strokes and dementia, although I remained super-calm (while saying a rather strong expletive in my head)

At home in Hampshire, my wife Sally (pictured) would pre-tie my ties and button up my shirts so I could just slip one over my head in the morning, after my shower

By Christmas, we had decided as a family that I needed to see a GP. Some may be tempted to put on a brave face or convince themselves they will get through it. In my view that isn’t brave or clever; it is delusional, even dangerous.

I told the doctor I feared that I was developing early-onset dementia. He said, with professional candour, that he didn’t know at this point, but that some people wrestle with just getting old, especially after leading the exciting, challenging sort of life that I had, with half a century on the frontline of TV news.

I didn’t feel old, I felt discombobulated — not all there, as it were. My long-term memory, especially on news, politics and the economy, remained — and remains — strong. I still wrote scripts well. But while my perspective and understanding were still crystal clear, it was hard to ignore the other issues.

For example, if you told me you had coffee with milk but no sugar and I went into the kitchen to make it, the likelihood of remembering that formula when I reached the kettle was remote (although, as my children pointed out, I’ve always been a bit scatty).

The GP said the only way to be certain was to have an MRI scan, and sure enough, after that, in June, I saw a consultant who came to the point immediately: ‘You’ve had a series of minor (infarct) strokes resulting in vascular dementia.’

My immediate reaction was terror at those two words, strokes and dementia, although I remained super-calm (while saying a rather strong expletive in my head).

Both Sal and I felt like we were in a scene from Emergency Ward 10 or Casualty. As someone who loves language and has made my career from it, there is no getting away from the fact that when a professional looks you in the eye and says you’ve got dementia, it’s a shocker, no matter how much you are prepared for it.

The good news, he said, was that I didn’t have Alzheimer’s. The bad news was that what I had could not be cured.

However, there was much I could do to stop it getting worse and to adapt to it. High blood pressure is key to my sort of strokes so, not for the first time, I was told to give up smoking and not drink to excess (which I have not done for ages). I should also take more exercise and get more fresh air.

I have smoked since my mid-teens, up to 40 a day at worst, and I genuinely wasn’t sure I’d be able to give up. But thanks to the NHS Stop Smoking clinic, which provides nicotine patches on prescription and a counsellor who rings me once a week, I have succeeded and am quietly proud of myself.

In an era of long waiting lists and full appointment books, the NHS has served me exceptionally well. I see three consultants: a psychiatrist, a stroke specialist and a cardiologist, who is trying to work out why my blood pressure is so high.

Part of my exercise routine now is to take our two dogs, Suki and Lily, out for an afternoon walk — as long as I’m back for the news at 6pm

Two other people have been a huge help: a mental health nurse who suggested a white board for the kitchen as an aide-memoire — something plenty of people without dementia find useful — and an occupational therapist sent by the stroke team, who has been brilliant.

We sit at the kitchen table and do spot-the-odd-one-out exercises, word searches and — the thing I find most difficult — looking at a jumble of shapes on a page, then trying to reproduce them in a drawing on the following page.

My eldest son Alex gave me a book of word searches and I try religiously to do one every day.

I hope these interventions are slowing the progress, and in fact my symptoms are much the same as they were when I was diagnosed in June. I certainly don’t feel that things have got worse, though they’re not notably better either.

The thing I have found most difficult to deal with is how the diagnosis has reduced Sal, the love of my life and mother of my children, to the role of carer. The one who double-checks my shoes, my buttons, my diary.

It is demeaning and soul-destroying, and she comes to it from a position of enormous calibre and talent. When I met her, she was already established in TV production, whereas I was the rookie trainee at Southern TV in Southampton.

I know she does all this out of love, but if you’re the one whose shoelaces need doing up, it’s not an easy ask. It’s not an easy thank you, either. It’s complicated. I find it difficult because I feel guilty.

She’s a truly remarkable woman, a real toughie, and I know how lucky I am. We are an incredibly tight, close family.

My eldest children, Alex, 41, and Clemmie, 38, have been with me every step of the way on this medical journey, and I see a lot of our two younger sons, Freddie, 30, and Oscar, 25, who run an equine business locally.

Oscar’s triumphs as a show-jumper continue to fill me with pride, and Freddie, his partner Laura and their son Jimmy, who is nearly two, are frequent visitors.

Anyone blessed to be a grandparent will understand me when I say that an hour with Jimmy is better than any medicine or counselling.

We live on a farm and, in addition to the horses, we have two donkeys, a Shetland pony called Nutkin, ducks, chickens, a cat and a tortoise.

Part of my exercise routine now is to take our two dogs, Suki and Lily, out for an afternoon walk — as long as I’m back for the news at 6pm.

And my feeding run for the poultry is a wonderfully therapeutic start to my day; when they’ve laid eggs my spirits soar.

What has made the world of difference to me is that I’m still able to work. In early spring, I decided to retire from full-time frontline broadcasting. My schedule was punishing: crack of dawn to end of play both Saturday and Sunday.

All was live and the bulk of it was ad-libbed, which is taxing on anyone’s brain. My employers, GB News, could not have been more supportive. They have kept me on the books with a contributor contract, which has just been renewed.

I feel blessed to be at a company that sees the value I can bring, regardless of my condition, and that is willing to make reasonable adjustments to enable me to carry on working.

I hope to continue to repay this kindness, trust and loyalty in the coming months; if I wasn’t up to it, I wouldn’t be put on air, and rightly so. But I am, so I am.

Fairly soon after my diagnosis, I spoke at a political dinner for my friend Michael Gove and took questions, which went well and reinforced that my condition did not impact me in many areas of my ‘old life’.

In fact, people who meet me always say they would have no idea I have dementia (two consultants said the same after talking to me for five minutes).

It matters, I think, to continue to be visible, to show people that dementia is not a cliff-edge. My short-term memory isn’t quite as sharp as it used to be, which is a drag but it is not catastrophic.

Yes, I have dementia, but it’s not the end of the road for me, I’m 71 and I still have a lot to give.

People sometimes ask if I feel frightened about what the future holds. I don’t, although maybe I should. I’m certainly apprehensive and concerned about the prospect of deterioration.

But I’m incredibly confident in my family: whatever nature and medicine throws at me, we will tackle it together. I feel so incredibly lucky.

Friends have been wonderfully supportive, and I am enjoying getting involved with charities such as Alzheimer’s Research UK, which funds studies into all forms of dementia and believes a cure even for my type may be out there.

Now that some months have passed since my diagnosis, I have had time to reflect and think more deeply.

What I want to shout from the rooftops is that if anyone reading this is having any odd symptoms, please don’t ignore them.

Seek help, listen to the experts and do what they advise. While it’s true there is no cure, there are very clever men and women out there working very hard on it.

There are things you can do this very day to begin the process of slowing down your decline. Onwards and upwards — and watch this space!

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